May 2022
Happy Spring!
Greetings from the Chief Executive Officer
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The sun is shining, the birds are singing and the flowers are starting to bloom! Such a great time of year; a season symbolic of renewal and growth! Organizationally, the Spring also represents the beginning of a new fiscal year, with a clean slate and renewed energy! With the pandemic restrictions lifting and a new strategic plan under our belts, our team is looking forward to the year ahead, beginning with a return to working in the office and in-person programming. We hope to see you soon!
Warm regards,
Michelle Franklin
Chief Executive Officer
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Living With Epilepsy
Tara Broadbent
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My name is Tara and I was diagnosed with epilepsy about 7.5 years ago after a car accident involving myself and my daughter, who was four years old at the time. We were on our way home from lunch at the Mandarin and I had a seizure while I was driving. I don’t remember how but we ended up in a cornfield on the opposite side of the street from where we were supposed to be.
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I was taken to Victoria Hospital for testing, and I can’t remember how long I was there. I wasn’t allowed to go home and had to stay with my parents for a while. I was diagnosed with epilepsy at the Urgent Neurology Clinic and told that my seizures had probably been happening for a few years, but I was unaware. The only indication was a strong feeling of déjà vu. Now I know I have focal aware and focal impaired aware seizures and absence seizures. I was referred to University Hospital for follow-up because I was having 4-5 seizures per day. This all happened during the Christmas break of my first year back to college. It was a really difficult time.
By now I’ve tried 8 or 9 medications and I’ve been told that I have drug-refractory epilepsy. After a week-long stay at the EMU within the first year and a half of diagnosis, it was decided that surgery was needed. I had a left temporal lobectomy and a few months after recovering I had to go back to the EMU because I was having seizures again. This time they found that the seizures were starting on the right side of my brain. The following year I had to have another surgery to have the VNS implanted. The pulse strength had to be increased every month and then every three months and eventually, it was as high as the epileptologist had ever set it at that time. It gave me the strongest headache I had ever had that was present all the time and no medication could take it away. Occasionally, I had to go to the hospital to be put on morphine for it, but it still didn’t stop. Nothing gets rid of it except to lower the VNS setting but that increases my seizures.
Click to Read Tara's Full Story
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We’re Hiring: Summer Student Positions ($15/hr)
In London and Windsor
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LONDON
Recreation/Summer Camp Coordinator *
8 week, 35 hours/week contract
*Position funded through a grant stipulating candidate must be a youth under the age of 30
Summer Camp Counsellor
8 week, 8 hours/week contract
WINDSOR
Summer Camp Counsellor 1
8 week, 20 hours/week contract
Summer Camp Counsellor 2
8 week, 8 hours/week contract
If you are interested in learning more about these positions, please send a note to michelle@epilepsyswo.ca. Resume submission deadline: May 27, 2022, at 4:00pm.
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Thank You Purple Nation
March Epilepsy Awareness Month
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2022 H.O.P.E. Award Winner
Ava Pitre
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Each year, ESWO presents a H.O.P.E. award (Helping Out People with Epilepsy) at our Annual Gala. It is awarded to an individual, group of individuals, or organization that has demonstrated compassion and caring for people living with epilepsy. Congratulations to our 2022 H.O.P.E. Award Winner! We recognized Ava and her contributions at our Annual Gala.
Ava Pitre is a very special 9 year old epilepsy warrior, who has made helping people with epilepsy her main agenda. Recognizing the peace of mind that her anti-suffocation pillow brought to her own family, she began a fundraising mission to provide pillows to other local families. Ava’s passion for spreading epilepsy awareness drives these Epilepsy Awareness Month fundraising efforts, which have raised thousands of dollars and provided pillows to 28 families (and climbing) living with nocturnal seizures! Ava’s compassionate heart and commitment to spreading epilepsy awareness have earned her this year’s H.O.P.E. award.
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Annual Gala Thank You
Mad Hatter Tea Party
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ESWO would like to thank all guests, sponsors, donors, and contributors for their support and commitment to making this year’s 36th Annual Gala “Mad Hatter Tea Party” a success! The event would not have been possible without everyone’s generosity and continued support of our organization.
We are so excited to announce that we surpassed our goal and raised approximately $49,300 to help further our mission and enhance the lives of individuals living with epilepsy!
For more information about the event – please visit our website:
https://epilepsyswo.ca/annual-gala/
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Thank you to our generous and valued contributors:
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Cheshire Champion Sponsors:
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Queen of Hearts Sponsors and Participants:
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Coolest Caterpiller Sponsor:
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Pediatric Epilepsy Surgery Conference
July 21 - 23, 2022 in Park City, Utah
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The Brain Recovery Project is hosting a two-day conference where individuals can learn from some of the world’s top neuro-professionals, educators, researchers, rehabilitation clinicians who will present rich sessions on issues related to pediatric epilepsy surgery.
Visit https://www.brainrecoveryproject.org/about-epilepsy-surgery/programs/conferences/together-we-climb/ for more information.
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Education of Patients/Families in Making Informed Decisions
Learn about a new way to make medical decisions!
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Join the CHWO team for an interactive education session on Shared Decision Making Parents of children with complex medical needs are faced with many challenging medical decisions. This session will provide tools, strategies and information to help parents and primary caregivers meet the challenges of decision making for their child.
The session will cover:
• What is Shared Decision Making
• How it works
• Tools and Resources
• Role of a Decision Coach
• Decision Examples
Upcoming Virtual Education Sessions:
May 23, 2022 4:00pm - 5:30pm
Link: http://bitly.ws/oQLR
June 27, 2022 4:00pm - 5:30pm
Link: http://bitly.ws/oQM7
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In-Person Summer Camp
With the pandemic restrictions being lifted, ESWO is planning on hosting in-person summer camps in both London and Windsor. Email holly@epilepsyswo.ca to be placed on the contact list once registration is open.
SEEKING VOLUNTEERS: ESWO will be recruiting volunteers to help us at our summer camp. If you are interested in receiving a volunteer application form, please email holly@epilepsyswo.ca.
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Virtual Support Groups
ESWO offers a virtual drop-in support group for both teens (aged 14-17) and adults (18+). The groups meet on biweekly Tuesdays from 4:00pm - 5:00pm to talk and offer support to one another, discuss epilepsy information and topics, and to play games and socialize. Initial registration is required to be added to the emailing list for the Zoom link, but there is no commitment to attend all or any specific group meeting. If you are interested in meeting others with epilepsy and learning more strategies to live well with it, please email Holly at holly@epilepsyswo.ca for more information or to register.
ESWO is working on developing more supports for caregivers and are planning an upcoming virtual support group for parents and partners of people with epilepsy. This group will run similarly to the teen and adult support groups in that initial registration will be required, but there is no commitment to attend all or any specific group. This will be an opportunity to share your experiences as a caregiver and build a community of support among people who can understand. The support group will run from 6:00pm – 7:00pm every other Tuesday beginning June 7th. If you are interested in learning more or attending, please email Holly at holly@epilepsyswo.ca
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YEP!
Do you have a child or teen between the ages of 12-18 living with epilepsy? Would they like to learn more about their epilepsy and how it can impact them as they grow up? Our Youth Empowerment Program (YEP!) could be just the ticket!
YEP! is made up of a small group of youth with epilepsy who meet once a week for 6 weeks over Zoom to chat, play games, and learn about epilepsy and how to live well with it. Youth will have an opportunity to build life skills, self-confidence, and meet peers who can truly understand their experiences. Our next group will begin on July 4th to August 8th from 3:00pm – 4:00pm. For more information, view our website and email Holly at holly@epilepsyswo.ca to register.
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UPLIFT
Apart from our caregiver support group, we will also be running caregiver UPLIFT groups. UPLIFT is a closed group of 5-8 people who meet virtually once a week for eight weeks to learn skills to reduce and manage stress and anxiety. The skills taught include cognitive behavioural therapy strategies and mindfulness strategies. If you are interested in joining an upcoming UPLIFT caregiver group, please feel free to contact one of our Epilepsy Educators for more information or to register – sarah@epilepsyswo.ca, sandra@epilepsyswo.ca or holly@epilepsyswo.ca
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Peer-to-Peer Networking Program
Whether you are a person living with epilepsy or you are supporting or caring for someone with epilepsy, sometimes it can be difficult for loved ones to be able to understand the impact that epilepsy has on you. If that is the case for you, ESWO has a Peer-to-Peer Networking/Matching program that may be of benefit. We can connect you with others who have had similar experiences and are willing to offer support and a listening/understanding ear. Alternatively, if you are comfortable with epilepsy and would like to offer support to someone else, we are always looking for more peer matches. For more information, please connect with one of our Epilepsy Educators – sarah@epilepsyswo.ca, sandra@epilepsyswo.ca or holly@epilepsyswo.ca
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Shop our Purple Store for new merchandise including Steed & Co. lavender items, brain mugs, and more!
Click here to shop all items: www.epilepsyswo.ca/shop
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Epilepsy Links
What's Happening on the Internet
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50/50 Draw
Plans are in the works for an exciting opportunity to win some money and support ESWO at the same time. We are planning a 50/50 Raffle Draw with the actual draw of the winning ticket at the Chatham Ribfest on July 10th, 2022. Tickets will be sold in person at the Canada Day Celebrations in Chatham on July 2nd as well as at the Chatham Ribfest on July 7-10, 2022.
Not planning on attending the Chatham Ribfest?
You can still purchase your tickets from anywhere in Ontario online. Check our website and social media for more information to come.
SEEKING VOLUNTEERS: We are seeking volunteers to help us sell 50/50 tickets on July 2, 7-10. If interested in signing up, please connect with sandra@epilepsyswo.ca.
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Third Party - Tee'in Off for Epilepsy, Oke Golf Tournament
Plans have begun for the 4th Annual Tee’in Off for Epilepsy Golf Tournament hosted by Team Oke. The event will be held in September at White Squirrel Golf Club. Please connect with jcoke@okewoodsmith.com if you’re interested in registering.
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Tee’in Off for Epilepsy Golf Tournament 2021
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